Rett Syndrome Parent Tips: Sleep

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Like many parents, we struggled with Claire's sleep disturbances for many years, including crying at night, waking up repeatedly, problems getting to sleep, etc. After six years of misery, Claire suddenly started going to bed at 8:00 PM, falling asleep immediately, and sleeping all night! It's been two glorious years of this now, and we hope it continues! Here's the winning combination:

  • Waterbed. Claire cannot fall out of bed, because when she rolls to the edge, the waterbed frame holds her in. It also is soothing to her, and can be maintained at a warm enough temperature to compensate for the fact that she doesn't tolerate covers on her.
  • No furniture. Claire would wake up and pull drawers out of her dresser, or clothes out of her drawers. Once the dresser was removed, so was the temptation.
  • Child proof handles on closet doors. If Claire can't get into the closet, she can't destroy what is in there. She has learned she can't get into the closet, so she no longer tries.
  • Lock on the outside of Claire's door. We turned her door knob around so that it locks from the outside. When she goes to bed at night, we lock her door, so she can't get out. Occasionally, she tries it to see if it is still locked, but usually she doesn't. If she ever finds it unlocked, we pay for it with another week of her getting up and shaking the doorknob trying to get out. We check on her before we go to bed, and leave the door unlocked when we know she's asleep.
  • Toys in large plastic tubs. Tubs are easily removed from Claire's room at bedtime, so she's not tempted to play with the toys at bedtime or if she wakes up in the middle of the night.
  • Miniblinds. Claire liked to chew her bedroom curtains, so now she has valances that she can't reach. She also likes to chew miniblinds, bending them and leaving teethmarks on them, so we keep the miniblinds open and pulled all the way up.
  • Press-on wall decorations. We don't have any framed pictures or shelves in Claire's room. We had a decorative shelf once, with a glass snow globe and other decorations, and one night she pounded so hard on the wall that the vibrations knocked it down. Now, we decorate her room with press-on wall stickers only.
  • Footie pajamas. Claire can't reach her diaper and dig into it or remove it if she can't get to it wearing one-piece footie pajamas. They also keep her warm and toasty.
The biggest lesson learned here is that if she has no temptations in her room, then she is better able to fall asleep, and less likely to stay awake if she temporarily wakes in the middle of the night. Keep in mind that this is a list of what works now. It is not a comprehensive list of everything we've ever tried, such as medications and all-night video screenings!
Tips: [Main] [Activities] [Clothing] [Communication] [Computers] [Drinking] [Feeding] [Games] [Hair] [Handwringing] [Medicine] [Music] [Sleeping] [Teeth] [Toileting] [Toys] [Transportation] [Videos]

Rett Syndrome: [Main] [Contact Us] [RS Site Index] [Calorie Boosters] [Claire's Story] [Cookbook] [Letter] [Tips]

Copyright © Deborah Schilling